November 26, 2007

A beautiful email we got last week tells of the life-saving help Cancer Guide Henry Dreher gave to a man with a terminal diagnosis, and refers to the list of suggestions BR gave that included contacting him...

Hello again, everyone.

I hope you all had the Thanksgiving holiday you wanted! Now onward to more holidays, hopefully without the holiday stress! (But, in the likely instance that this is not the case, do check out my Thirteen Lucky Tips for Foolproof De-Stressing here.

This week’s Inspiring Story comes from a nurse, the wife of a man who was diagnosed 2 years ago with a rare form of presumably deadly cancer. Given no hope by the docs, she looked up the awesome Henry Dreher, a prominent health writer, cancer guide and researcher-genius, who went to work looking into the most cutting edge possibilities for treatment. He found the right kind of protocol and encouragement to give him a new lease on life.

In her note, she refers to the list of suggestions I wrote four years ago as a result of my own husband’s illness - this was where she first learned about Henry. Being as how this is the third mention of this list in as many weeks, I figure it’s probably time to post the whole thing once more. Keep in mind that this is geared especially toward situations where there isn’t much hope. But most of these suggestions would serve any situation. Here it is, in its entirety:

Lessons Learned from My Husband’s Illness

Don’t assume providers know what they’re talking about. You’ll want desperately to believe in them, because you’re so vulnerable, but please double and triple check the information you’re getting, even if the healthcare institution thinks it’s the best in town. (We had to fire our local "world class health care institution" for confusing the diagnosis, brutalizing us with tantrums on the part of stressed out docs, and delaying numerous tests, either because it wasn’t convenient for them or because the docs didn’t talk to each other or because they wanted to squeeze the maximum amount of bill-able procedures out of us. It was a nightmare. We transferred to excellent and compassionate care elsewhere.)

Use whatever contacts you have to get the most up-to-date information possible. The landscape of cancer treatment is radically changing by the minute these days. There are now many new, multi-targeted treatments that, when used in combination, can beat the odds, and a lot of well-meaning providers know ZIP about them. This means you have to be proactive at a time when you feel like collapsing. My advice: get cracking; don’t collapse. (We wound up taking advantage of the considerable talents of health writer
Henry Dreher, a cancer guide who helped us research the options and made sound suggestions; and we went to
The Block Center for invaluable consultation on nutrition, supplements and off-label drugs. Both these fabulous resources are featured on our Clinician’s Corner).

Think outside the treatment box, especially if you know standard protocols have limited success rates. You can tell your doc that you’ve read the stats and you want more than just standard care. If that’s not an option at his or her institution, ask if he or she will serve as local backup while you go elsewhere for more cutting edge care. (My husband, for instance, was on a standard protocol of Carbo/Taxol and Zometa, but he was also taking 2 drugs designed for other illnesses, but which happen to have special anti-angiogenic properties that kill tumor-feeding blood vessels - Celebrex and Lovenox, along with a modified macrobiotic diet and massive doses of nutritional and herbal supplements from The Block Center. I’m not recommending this for anyone else - this was his individual treatment plan, arrived at after weeks of study and tests. But I’m offering it as an example of what can be done beyond standard care. Of course, he also listened to guided imagery for the first time in his life, and he benefited enormously from the doting attention of his children, friends and community.

Be really clear with friends and family, what you need from them and what you don’t need from them. Again, it’s not fair that you have to do this at a time when you have no energy for it, but, trust me, the price of NOT doing it is too high. If you want visits and calls and cards, tell them. If visits, cards and calls feel like an assault, tell them that. If they insist, tell them "It’s out of the question". And let your kids help out. There’s no better resource and they’ll feel good about contributing; and it will deepen and enrich their relationship.

Also, be smart about asking people to do what they’re good at. Some friends are great listeners. Others are terrible listeners but great cooks. Still others have a talent for efficient errand running, or internet database searching. They’ll be glad to have an assignment they can actually perform well for you, and you’ll be very glad for their excellent help.

When people start giving you unwanted advice, or sharing their own cancer horror story with the hideous outcome, or guilt-tripping you about how you’re not meeting their needs, you need to be at the ready with a firm, fast response: "That is not helpful" works well, as does "I don’t need to hear that right now" or "We need to change the subject"... and, always, my favorite, all-purpose standby, "That is out of the question". Again, you’re not going to be in the mood to be this assertive, but fake it. It’s necessary protection from well-meaning but clueless people.

Ask for prayers. They are felt by the giver and the receiver alike, and they can perform miracles

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As a footnote, I should say that my husband eventually passed away from this illness. By the time he was diagnosed, his body was already severely compromised; the lung cancer had filled his entire chest cavity, choking out even his famously powerful, huge heart. But he died knowing he had done everything possible to stay alive, and that meant a lot to him and to the rest of us, too.

Psychotherapist, author and guided imagery pioneer Belleruth Naparstek is the creator of the popular Health Journeys guided imagery audio series. Her latest book on imagery and posttraumatic stress, Invisible Heroes: Survivors of Trauma and How They Heal (Bantam Dell), won the Spirituality & Health Top 50 Books Award